A simple search of #breastcancer on Instagram yields over three million powerful posts of women sharing everything from diagnosis to mastectomy hacks and post-chemo hair growth.
Nearly 10 percent of new breast cancer cases are found in women under age 45, according to the Centers for Disease Control and Prevention, and with over 70 percent of all users on Instagram between ages 18 and 24, according to an article published in April 2021 by the Pew Research Center, it’s no surprise that the majority of posts with these tags are by young women.
For three-time cancer survivor Bianca Muñiz, deciding to publicly document her breast cancer diagnosis on Instagram — starting on the day she had her mastectomy — has allowed her to connect with people from around the world.
“I’ve met so many women going through similar journeys as myself and not just survivors — previvors (someone who is high-risk for breast cancer), metastatic thrivers (someone living with stage 4 cancer) and what’s remained the same is the love and community,” Muñiz says. “The friendship we’ve all given each other, I really don’t know where I’d be without it.”
Whether you’re newly diagnosed, living with a stage 4 diagnosis, making sense of life after cancer, or navigating high-risk decisions — here are nine women creating an online movement to help others feel less alone.
1. Trish Michelle
After being diagnosed with breast cancer at 36, Trish Michelle realized a couple things: She needed to put her health first, and she wanted to bring visibility to her journey so others going through treatment wouldn’t feel as alone. When finding a community was proving to be more difficult than she thought, Michelle set out to build one herself.
And once she did, the rewards were endless.
“The flood of touching notes from strangers has been incredibly uplifting, offering words of encouragement, hope and love,” says Michelle, The Breasties’ chief community officer. “Sharing my story is a source of strength, as is knowing that in my small way I’m helping others continue to navigate through difficult times.”
In 2020, at the height of the COVID-19 pandemic, Michelle, along with friend and fellow Breastie Tiffany Dyba, began livestreaming on Instagram together, where they would chat, listen to music, and connect with other people, particularly those also in the breast cancer community.
They eventually cofounded @hiphop_happyhour, an online community that supports other people diagnosed with breast cancer and introduced their Reclaim October campaign in response to the heavy amount of pinkwashing that companies and organizations participate in every October. For each week of the month, Hip Hop Happy Hour selects a breast cancer charity to raise money and donate to, while educating on the disease and empowering others to reclaim and share their own stories.
Ultimately, Michelle says she feels she’s on a mission to raise awareness about breast cancer.
“By sharing my story, others are encouraged to take preventive measures, such as getting regular screenings,” she says.
The Most Challenging Part of Sharing Her Story?
Having to constantly relive her cancer experience, being vulnerable, and exposing herself to judgment can be emotionally draining, Michelle says, and finding the words to convey her experience while also trying to set boundaries for herself can also get tough.
“While major strides have been made, I worry about negative reactions, which can be hurtful and discouraging. Despite these challenges, I persist,” Michelle says.
Follow @trish_newyorkcity.
2. Melissa Berry
After being diagnosed with breast cancer, Melissa Berry set out to create her online presence. Her primary goal: to help women facing a breast cancer diagnosis feel as good about themselves as possible. She asked herself, “Where do I find a fabulous wig? What kind of bra should I wear? Where’s the Vogue of breast cancer?”
Berry’s passion for fashion and helping others in the breast cancer community has led to several rewarding experiences, Berry says. This includes getting to walk in an AnaOno fashion show, becoming board chair for the Triple Negative Breast Cancer Foundation, and taking on a brand ambassador role for LOGO by Lori Goldstein.
In addition, last year she created a bone health awareness campaign with TOUCH The Black Breast Cancer Alliance and Carrie’s Touch.
“So many women reached out to me to share that they were moved to get their DXA scans (bone health density test) as a result of our campaign,” she says. “When I look back and see that I am truly making a difference, sharing my personal breast cancer story with the world is a no-brainer!”
Berry is also the founder of Cancer Fashionista and the host of Dear Cancer, I’m Beautiful, a podcast discussing breast cancer, and offering fashion and wellness advice.
The Most Challenging Part of Sharing Her Story?
When she first shared her story, Berry, a freelancer in PR at the time, worried about how her coworkers and clients would react. “I was so worried that [they] would think that I wouldn’t be able to do my job. I was afraid of being looked at differently in a professional setting,” Berry says.
“I was so wrong! All of my clients and colleagues were all so incredibly supportive, and continue to be my biggest cheerleaders as I’ve evolved into a full-time breast cancer advocate.”
Follow @cancerfashionista.
3. Kelly Crump
After being diagnosed with metastatic breast cancer at 38, and years of baring it all in front of her doctors and healthcare team, Kelly Crump became comfortable revealing her mastectomy scars, she says. And that’s what she told the editor who asked her what she was okay with showing while at a fitting for a Sports Illustrated shoot.
“It was not preplanned for me to bare my reconstructed breast showing my mastectomy scar, nor was I specifically asked to do it,” Crump says.
In 2022, Crump became the first cancer patient to show a mastectomy scar in a Sports Illustrated swimsuit issue, and says it’s been the most impactful opportunity she’s been given to date. Since then, she’s shifted her Instagram account from a lifestyle page to one that focuses on life with metastatic breast cancer, which has been a fulfilling decision, Crump says.
“You often read how people think that those who share their life on social media are doing it for vanity or for affirmation. That’s not the case for me,” Crump says. “Instead, I’ve been able to build a community. We support one another, we understand what others are going through, and we also have a laugh at how crazy life with cancer can be.”
The Most Challenging Part of Sharing Her Story?
It’s difficult to be online when you’re feeling worn down from treatment, Crump says, but she stays motivated for her community. “Keeping up with DMs, comments, content creation, and stories while feeling lousy,” Crump says. “The last thing I want to do is be on my phone when the room is spinning from nausea and sickness.”
“But then I think of how others are feeling, or what they are dealing with, and I try to show up as much as I can. The community is what keeps me going on days when I just want to give up.”
Follow @itskellycrump.
4. Stephanie Seban
For Stephanie Seban, a diagnosis of metastatic breast cancer at 31 led to an unwavering commitment to help young thrivers.
“I made it my mission to educate myself and learn everything I possibly could about the treatment and prevention of cancer,” Seban writes on her website. Seban’s thirst for more information on the disease, and the desire to share that knowledge, is what inspired her to share her experiences online.
“The most fulfilling part of being open about my journey is that I’ve made real connections with some truly incredible women,” Seban says. “To be 100 percent honest, I can’t wait until all of us breast cancer advocates are put out of business because a cure has been found. That is the day I believe in and dream of.”
With best friend Amanda Anik, Seban cofounded Thrive Gang, an inspirational gift and jewelry company. Seban also currently serves as a breast cancer advocate for the Department of Defense.
The Most Challenging Part of Sharing Her Story?
When you open up about a cancer diagnosis in an online space, there’s a lot of responsibility that comes with it, Seban says.
“I get lots of emails and DMs from fellow thrivers asking for guidance and advice, and I try my best to answer as best as I can. However, I can’t answer them all, and sometimes I feel guilty about that.”
Follow @stephanie_seban.
5. Kellie Goss
For Army veteran Kellie Goss, going against the grain comes naturally. After watching her mother and sister battle breast cancer, Goss learned that she has a BRCA1 gene mutation, which greatly increases her lifetime breast cancer risk.
Goss made the brave decision to have a preventive mastectomy. But when she began searching online for support, Goss, who lives in Atlanta, was discouraged to see that very few women sharing their preventive surgeries online were women of color.
“When you don't see yourself represented, it's easy to assume that this option isn't for you,” Goss says.
Goss has since made it her mission to use Instagram to help women of color feel represented in the BRCA community. She credits the bravery of others sharing their experiences online for getting her through. “They make me feel like I have wings,” she says.
The Most Challenging Part of Sharing Her Story
“It has pulled me out of my comfort zone, but true comfort is birthed when you can embrace the best parts of yourself. I didn't allow breast cancer to write my story.”
Follow @browngirlandbrcaplus.
6. Ashadee Miller
At the end of 2017, when Ashadee Miller was knee-deep in chemo treatments for stage 3 breast cancer and feeling like her body was giving up, she used the turning of the new year for inspiration to start sharing the ups and downs of her diagnosis on Instagram.
“As I started to share my story it was so shocking and inspiring how the breast cancer community became real and alive to me and embraced me and my story,” says Miller, who resides in Millersburg, Ohio.
According to Miller, one of her motivations for sharing is to help people who’ve never had cancer to understand, “the struggles we deal with that we rarely share,” and for “people to see us as more than ‘pink ribbons.'"
On her Instagram you’ll find candid posts about being a young mother and how she navigates talking to her children about cancer. Her husband, who she fondly refers to as “husbandman,” also makes many cameo appearances.
The Most Challenging Part of Sharing Her Story
According to Miller, how long the disease lingers and the emotional toll of sharing can be the most challenging part. “It’s easy to share the good days, but the hard ones or the ones that don’t make sense ... It’s tough,” she says.
Follow @dearcancer_itsme.
7. Paige More
Paige More remembers the overwhelming anxiety she felt when her oncologist told her that her BRCA1 gene mutation increased her lifetime breast cancer risk by up to 87 percent.
“I didn’t want to worry anymore and I wanted to do everything in my power to prevent being diagnosed with breast cancer, like so many women in my family before me,” says More, who decided to greatly reduce her risk by having a preventive mastectomy at age 24.
Initially, More planned to go through surgery very privately but kept thinking about her younger sister, who has yet to be tested for the BRCA mutation.
“I didn’t want her to have to experience the isolation and fear that I felt, and thought that if I documented my experience for her, she could look back on it one day if she tests positive,” she says.
More chose the handle @paige_previvor to represent surviving a predisposition to breast cancer and started to gain widespread attention for her positivity and empowering photos of her scars. Today, she has 37,000 followers.
The number of women reaching out to More for support through Instagram inspired her to start hosting meetups for young women affected by cancer to come together in New York City, and in 2018, she cofounded the nonprofit, The Breasties, and currently serves as their chief visionary officer.
The Most Challenging Part of Sharing Her Story
More is candid on her Instagram about having to learn how to balance being open with her followers while also giving herself time to process and heal in private.
“I think it’s so important for us to remember that in order to make an impact, we don’t have to share everything, and it’s okay to keep some things sacred and to wait until you are ready.”
Follow @paige_previvor.
8. Bianca Muñiz
Bianca Muñiz is a three-time cancer survivor who was first diagnosed with ovarian cancer at age 11. At age 22, she was diagnosed with breast cancer and at 26, Muñiz learned that she had developed lung cancer. She found out through genetic testing that she has a rare gene mutation called TP53, which greatly increases her risk for many different types of cancers.
Muñiz shared her diagnosis for the first time on Instagram the day she was scheduled to have a mastectomy. She initially searched online to try to find other young women who have had mastectomies and turned up empty-handed.
“Since this was my second time being diagnosed, I thought of it as a sign from the universe, like, 'Okay, there’s no more hiding, let’s use this to help other people.'"
Muñiz credits singing and songwriting as a form of therapy and comfort for her. She reflects on a song she wrote called "Take Me Away," which she realized after the fact was about the unspoken depression that comes with a cancer diagnosis.
Her favorite part of sharing online with over 20,000 followers? The women she’s been able to connect with, of all different backgrounds, diagnoses, and genetic mutations.
Earlier this year, Muñiz started a music group with her sister and friend called That Girl Group. The trio released their first single in April of this year. Muñiz says she’s planning on moving to LA to continue pursuing her music, and is excited to be going to Paris this September to work with La Roche Posay as a member of their Cancer Journey Supporters Squad.
The Most Challenging Part of Sharing Her Story
“The most challenging part is probably the fear of being stuck in a box,” Muñiz says. “I was a musician before this journey, and I fear that people will only see me as ‘that cancer girl’ and not a serious artist.”
Follow @biancamunizofficial.
9. Allyn Rose
At age 26, Allyn Rose underwent a double mastectomy as a preventive measure after losing her mother, grandmother, and great-aunt to breast cancer.
“I didn’t want to suffer the same fate as the women in my family and was determined not to be a victim,” she says.
After she competed as a Miss America contestant, Rose’s story went viral when she shared her decision to undergo surgery. “That’s when I truly began to see the impact of one person’s voice,” she says.
Rose says she often finds herself talking to women from all corners of the world going through similar experiences. “I always tell women never to be afraid to reach out to the people that you follow on social media. I have made some of the best friendships of my life simply by sliding in the DMs (direct messages) of a person that I found inspiring on Instagram,” she says.
In 2019, Rose launched a foundation called The Previvor to provide women at risk of breast cancer with mastectomy, reconstruction, and genetic testing information. She has also begun a partnership with Koning, a company working towards developing and implementing a new type of breast scan to detect breast cancer.
Rose continues to use her platform to educate women, especially young women, and empowers them to advocate for themselves. It’s also important, Rose says, for women to understand their bodies, and encourages them to do a self breast exam every month.
“Knowing the way your body feels, and what’s normal for you, is your first line of defense in preventing breast cancer,” Rose says.
The Most Challenging Part of Sharing Her Story
According to Rose, the most challenging part of publicly sharing her story is opening herself up to criticism. “I have to continuously remind myself that there are other women out there that need to hear that you can walk away from this experience and thrive,” she says.
Follow @allynrose.
Additional reporting by Lambeth Hochwald and Leona Vaughn.